Thursday, December 31, 2009


I'm tired. I was driving to my mother's yesterday and heard they'd be counting down the top 20 songs of each year of the entire last decade, and it hit me like a bucket of ice water. I've lost the better part of a decade to my chronic illnesses. And not just any decade, one of the most precious: my twenties.

I was diagnosed in October of 2002. Yup. Over 7 years now. I was 23. At the time, I was still convinced I had the world at my feet. I had no idea how much I was about to lose. My health, my job, and slowly, my identity and independence. I haven't fallen in love since that year. (And this from a girl who had her fair share of falling in and out of it in the few years since discovering it.) I haven't held a job more than 7 months. Worse, my life seems to have regressed so much that although at 23 I felt I was getting old and time was going by too fast for my liking, at 32 I don't feel anywhere near my age and I'm still struggling to remember that I need to look for wedding rings when checking out guys, and that it's perfectly normal for my friends, even my little brother's friends, to be getting married and having children.
Everything I planned and dreamed I would have achieved at this point in my life is so out of my reach it seems like those dreams were from a lifetime ago.
And no matter how much I try and reinvent myself, what I try to concede, or how much I try, I can't seem to get anywhere, and the last few months I've found myself slowly giving up in a million small ways, and I can't decide if it's for the best that I not try so hard, at least right now, or if it is the beginning of the end of me. Either way, I don't really care, because I'm tired of the struggle.
Still, some days, I wake up, and there's a small flame burning deep in my core that gives me life, makes optimism as natural as it once was, and convinces me that everything will be ok, that maybe there is some mysterious path waiting to unravel itself before me.
Sometimes, this lasts for days, sometimes it's just hours before I'm feeling like enough is enough already...and wishing for a way out.
So I'm not going to look back much; I've had worse years, emotionally, but physically, I've never been sicker, and I don't know what's worse; but I'm not feeling quite brave enough to look forward and hope, again, that this year will be better. Instead, I will do my best to live in the moment. And the next. And the next.

Happy New Year everyone.

Wednesday, December 23, 2009

Phoenix Rising Researcher of the Year

This was my favorite part of the article:

"Three of the six teams funded by the CFIDS Association smashed the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain CFIDS Association Research Initiative is now collaborating with the group examining autonomic nervous system problems in the body. Then these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS."

Tuesday, December 22, 2009

A Better Day

Today actually went pretty well. I finally got a chance to practice pacing, and I think it was helpful.

I woke up, drank even more water than usual, and had some salt. I lucked out, in that the laptop was forgotten today, so I got to recline in bed while checking my e-mail (I think sitting up at my desktop pc to do that yesterday is what did me in, definitely what triggered the tachycardia, possibly along w/hormonal changes).

I expected total madness when I hit the stores, but lucked out; I decided ahead of time that I was going to get a gocart, since I had returns to do and that involved standing in line, which kills me. (I don't faint, but I feel really, really ill if I stand in lines for even a couple of back gets really stiff as well, and hurts after just a few minutes.)

I lucked out though, no wait at Tar-jay, and I did do the gocart thing at WalMart, though I felt like a huge dork, all made up and healthy-looking, I got some stares, especially from peopole my age, and I could imagine what they were thinking, but I just smiled or looked away...and it worked, I got the stuff I'd been dreaded all taken care of and wasn't completely exhausted for a change; so nice!

I lucked out with parking, too, now that I think of it, it wasn't looking good, even the handicapped spaces were all taken at both stores, but I got great parking at both stores in the end...

I even made it to a 3rd store, and the doctor (though that was fruitless, as he wasn't there...) and was only worn out when I got home from carrying my bags and coats inside. I was planning on having a nice glass of wine, as a glass of beer had a great effect on me last week, but I ended up having to take a Neurontin for some excruciating cramping; even that worked out, it helped, and it didn't make me sleepy like I expected, perhaps just relaxed :)

I cooked up a quick egg dish for dinner, tidied up a tiny bit, and gave the cat a good, long overdue brushing, which finally did wear me out. It still seems ridiculous that such an easy task could wear me out...of course, I did have to do a little extra because of the allergies...brought the air filter in from the other room, and wore a mask (just the dander from petting her with my foot started my nasal passages swelling, soo...)

Ah, this all sounds so silly even to me, so mundane, but I'm so grateful. OH!
And I did realize a cool thing today, my brain fog is SO much better. It's like someone removed the cotton candy that was clogging it all up and everything runs smoothly...I'm not running around with my forehead wrinkled constantly trying to hang onto every thought lest it disappear before I was done with it. It was so incredibly exhausting! I don't know if it's a result of my social isolation, forced rest, Oxymatrine/immune modulators, or what, but I am so grateful.
I hadn't realized how much better it had gotten until I had a bad fog day a few weeks back and I just wanted to was so stressful, and every little darn thing was so difficult because I kept forgetting what I was doing, where I was going, what I needed to do or take to get there...and then it hit me that it used to be like that ALL the time, and I don't know how I lived like that...

I watched an episode of a TV show called "Fringe" last night; it's a Sci-Fi show, and this man who'd been in a mental hospital suddenly "went sane" after having something surgically removed from his brain, and he was describing how it felt, and he said, "It was just like ah, suddenly...Free..."
That's what it's like without the awful cognitive dysfunction, I can just think and do and function freely, without feeling like my brain is cramping up from the effort, everything's running smoothly instead of bumper to bumper traffic to hold onto and retrieve thoughts!

Yay :)

Monday, December 21, 2009

Finally found it: CFS & XMRV on Dr. Oz Show


A Not-so-good Day Post

I woke up feeling pretty good, all things considered. I was ready to go, even planned to do some cleaning, which for me, is a very big deal.

Except, I guess I stayed on the computer too long (maybe an hour?) and kept ignoring the nagging need to lie down until my heartbeat joined in the internal chorus, threatening to smother me if I didn't listen.
I lay down, but it was going crazy, my feet got cold, my hands, my head even, and my lips tingled along w/my heartbeat. (Even heat from my Thermophore pad wasn't helping. I'd hoped it would not just warm me up, but get more circulation to my upper body so my heart would quit working so hard.)

I'm so annoyed. I had some Celtic Sea Salt and a couple of glasses of water, which helped a little, eventually. But I don't want to spend the day in bed. I made the choice to go on another day, and I wanted to make the most of it.
I'm so tired of all of this I don't even feel the disappointment anymore, it's a strange, numbed, dampened version.

I'd planned out my day but it was too much to begin with and now it seems pointless to try. I'm tempted to go at the kitchen floor anyway, give my heart something to flip out about. I really want to lie down though...